Today begins the next chapter in this saga. Every story has a beginning a middle and an end. Since this is written in present tense. I am forever in the middle. The end (which will be far into the future) is for another day.
We saw Dr Schrier on Monday and he recommended that I start on treatment for the amyloidodsis. This is sooner than I expected, but I am excited to finally attack this 'bad boy'. He didn't find any other significant areas of involvement with the disease. The plan is to use oral chemotherapy with Revlimid and Decadron. Revlimid is a new drug which is similar to Thalidimide (a very nasty drug that caused birth defects in the 60's). It has been used with good success both with Multiple Myeloma (the plasma cell cancer that my Dad had) and amyloidosis. I will also take Decadron, a very potent steroid, (like super-prednisone).
Once again, my case is unique in that they usually don't treat patients after a transplant, so they are starting at a low dose because of all of my other anti-rejection drugs. It's fun to be the 'Guinea Pig'. If the medications don't drop my protein levels (kappa light chains) to normal. Then I will still need a stem cell transplant. Of course, we are hoping for the best.
One downside of this is that the folks that make the blood test for rejection (Allomap) don't know how the Decadron will effect the test so they don't want me in the Allomap program, which means more heart biopsies. Which to me is a small price to pay if the meds help me.
My friend, Debbie, is doing very well after her transplant and is waiting to see how they treat me so she can follow in the same path.
I am feeling so much better and walk 2-3 miles a day. I get stronger every day. I plan on remaining in the middle of this story for some time. The story's end will have to wait for another day, and probably another author, hopefully one of my grandchildren.